Special Needs Series: Autism

Seeing Claire Danes win a Golden Globe Sunday night reminded me how much I loved the movie Temple Grandin. What a great segue to this week’s special needs topic, autism. Let’s start with a simple definition and go from there: Autism is a neurological disorder that affects communication, social interaction skills and behavior. The symptoms usually become evident before a child’s third birthday.

Some interesting things to note: autism occurs about four times more frequently in males than in females. Nearly 50 percent of people with autism require pictures or symbols to help them communicate rather than words. Autism may affect as many as one in every 110 births, and nearly 1 in 70 boys. Autism is thought to be a genetic disorder, and is not preventable so far as anyone can tell. And despite Dustin Hoffman’s autistic genius example in Rainman, most people with autism have significant learning problems.

As I researched this topic, I became very curious: if this diagnosis is typically made by age three, how do you know what the signs and symptoms are? One parent of an autistic child said that were certain, obvious behaviors that caused concern in her child, such as the inability or lack of interest in engaging in play (or even eye contact) with the parent or caregiver. Another mom stated that the symptoms in her son were not pronounced, and if she had not taken him to a speech therapist, they would have missed the diagnosis. So what makes a child autistic?

A diagnosis of autism requires impairments in all of the following areas of development: *

1. Social Interaction: People with autism often do not relate well to other people (particularly peers), have difficulty learning to play with others, can not effectively use non-verbal behaviors such as eye-to-eye gaze and facial expressions while interacting and have difficulty sharing information and experiences with others.

2. Communication: The impairment includes both spoken language and non-verbal skills (gestures, body postures, imaginative play). People with autism who speak may have difficulty with speech production and/or conversational skills.

3. Restricted Repertoire of Behavior, Activities and Interests: This includes some of the unusual behaviors that are often associated with autism such as: stereotyped body movements (hand flapping, toe walking, rocking, etc.), insistence upon following non-functional routines or rituals, preoccupations with parts of objects (wheels, handles, etc.), and an abnormally intense or focused preoccupation with a very limited range of interests.

* Reference: American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorder, 4th Edition, 1994.

It’s important to realize that there are other indicators of autism which may/may not be present. These can include difficulty with eating, sleeping and using the bathroom. Autistic children may also have unusual fears, lack of awareness of danger, repetitive behaviors and speech, and attempt self-injury. Unexpected sensory reactions, like extreme reactions to loud noises or touch are often present. (If you saw Temple Grandin, you know that Temple herself could not abhor human touch, and after spending time on her aunt’s cattle ranch, she made herself a hug machine similar to a cattle-inoculating “hold” pen. This machine simulated a hug without human interaction, which Temple found very soothing.) Individuals with autism may have all, some, or none of these indicators in addition to the three impairments listed above.

The good news? Autism is treatable. While there is no known cure, much has been learned about autism in the past ten years. Children cannot outgrow autism, but studies show that early diagnosis and treatment lead to significantly improved outcomes.  (Source: Autism Society of America)

What do I do if I think my child is autistic?
Here are some signs to look for in the children in your life (also from the Autism Society of America):
– Lack of or delay in spoken language
– Repetitive use of language and/or motor mannerisms
(e.g., hand-flapping, twirling objects)
– Little or no eye contact
– Lack of interest in peer relationships
– Lack of spontaneous or make-believe play
– Persistent fixation on parts of objects

If your child is exhibiting any of these behaviors, take note of the situation including time of day, feeding/nap status, and any other details you can think of. Bring these details to your health care provider for further investigation.

What local resources are available for autistic children and their families?
Several agencies in Raleigh offer state-wide support:

The Autism Society has chapters nationwide, and is working diligently to increase awareness and availability of beneficial programming and insurance coverage. The NC chapter is located in Raleigh; visit their webpage to learn more or email nc-northcarolina@autismsocietyofamerica.org . Services include Information and referral, advocacy, public education, residential summer camp, recreation therapy consultation, and a variety of community based programs and the world’s largest autism/ASD Bookstore.

The Learning Disabilities Association of North Carolina (LDANC) promotes awareness of the multifaceted nature of learning disabilities. LDANC supports equitable opportunities for people with learning disabilities to participate in life’s experiences. They seek to accomplish this through education, support, advocacy, collaboration and the encouragement of ongoing research. E-Mail ldanc@mindspring.com or visit http://www.ldanc.org to learn more.

North Carolina Department of Public Instruction – Exceptional Children Division’s mission is to assure that students with disabilities develop mentally, physically, emotionally, and vocationally through the provision of an appropriate individualized education in the least restrictive environment. Visit  http://www.ncpublicschools.org/ec/ to find out more.

The NC Early Intervention Service has Programs for Infants and Toddlers with Disabilities:0-3. The Infant-Toddler Program is a variety of agencies working together to provide early intervention services for children ages birth to three who have special needs and their families. Early intervention services help young children grow and develop and support their families in caring for them. Email Duncan.Munn@ncmail.net or visit http://www.ncei.org for more information.

Local programs:
The Meredith College Autism Program (MAP) is a behaviorally-based, early intervention program for preschool children with autism. MAP is designed to serve children with autism and Pervasive Developmental Disorder (PDD), and provide students with experience in working with children with autism and PDD. The behavior modification principles and discrete trial teaching are used to help children reach their potential through the development of language skills, social skills, self-help skills, pre-academic skills, motor skills and play skills.

The MAP Workshop Model provides full-day consultation and parent/staff training on a four to six week interval. NOTE: Children who participate in this model must begin services at or before the age of six (72 months) and must live within the state of North Carolina. For more information, email autism@meredith.edu or visit http://www.meredith.edu/autism

Incidentally, there is a very interesting article by the actual Temple Grandin about teaching children with autism here: http://www.cdrcp.com/autism/teaching-tips . She details how she thinks in pictures, and suggest some approaches to try with autistic or otherwise non-communicative children.

The biggest message I heard from all sources was unilaterally positive: be patient, know that others are here to help, and don’t lose hope. I can’t help but think that someone, somewhere chose these incredible moms to parent such special, wonderful children.

Do you have an autistic child, or know someone who does? What help, advice, or resources can you offer?